A mutual colleague introduced us, writing in his email, “You should know each other.” When I looked at Bob Cafaro’s website and learned about his experience and his book, “When the Music Stopped: My Battle and Victory against MS”, I understood why. This guy was deeply involved with what illness does to the body and the spirit. Yet, I’ve always been troubled describing living with illness as a battle I”m fighting. Even if it can feel that way, I don’t want to encourage the image of being at war with my body. But reading Bob’s book challenges this assumption. I don’t necessarily ‘agree’ with everything he says but that’s not the point, is it? It’s about learning what others have found to be true for themselves, trying it on and seeing if it’s a fit. So, I interviewed him to share with you what I find most compelling.
Rosalind: Please describe what you meant by the title that you used for your book?
Bob: The title, “When the Music Stopped: My Battle and Victory against MS,” serves two purposes. The first part alludes to a sudden and devastating inability to play the cello, which was from the loss of the use of my fingers. As a professional cellist with the Philadelphia Orchestra, music had been a major part of my life since childhood. After eight months with the disease, three attacks and a four-day hospital stay from dehydration, I was no longer able to make music with the instrument. The cello had been my soul mate and partner-in-life, and it was suddenly taken away.
The second part of the title refers to an attitude that was adopted following the prognosis of a future on permanent disability. From that moment I decided the fight was not just against an illness; it was a fight for my life. It was the one fight I would not lose.
Rosalind: What was your purpose in writing this and do you think you achieved it?
Bob: My objective was to write the book I desperately needed when diagnosed with MS. Frustration and anger are common emotions following a diagnosis, because medicine and neurology are limited with what they are able to do for MS patients. I had read several books written by people with MS and those books mainly offered ways to manage and accept the disease; I wanted more. After a diagnosis of MS, most people will be distraught and there will be a tendency to not think clearly. That is the time when a step-by-step method of dealing with the disease will be most helpful. The answers that were key to my success were found with diet, exercise, studying MS rates worldwide, and learning the placebo effect through meditation. I also benefited immensely from studying the minds of people who accomplished the impossible.
My MRIs from 1999 showed over 50 active lesions in my brain and one in my spinal cord that measured 3.5 cm in length. I was legally blind, unable to use my fingers, and I had almost no physical strength. My MRI’s from 2013 show no lesions and no signs of the disease. I have been completely asymptomatic for more than 17 years.
Rosalind: Did you have an audience in mind as you wrote this?
Bob: This book was written for people who suffer from MS as well as other chronic illnesses. The answers I found had largely been overlooked by medical professionals, so here was a chance to share my findings with the people who stand to benefit from them.
Rosalind: If you had one (or two) messages you wanted to convey from this book, what would it be?
Bob: The first message has to do with the so-called “genius.” Most people think of a genius as someone who accomplishes an unbelievable feat, comes up with an amazing invention or even displays an impressive achievement in music or art. After the finished product is presented, that person is then considered by many to be a genius. What people commonly fail to take into account is the genius’ devotion of at least 10,000 hours to deliberate practice. I can state with great confidence that I am not a genius. As a professional cellist and not a writer, I devoted unlimited time to not only the cello, but also to MS research and the writing of my book. I firmly believe we all have amazing potential and an ability to attain perceived genius status – but only after devoting endless hours and perseverance.
My second message originates from the famous story of a truck that becomes wedged under an overpass. Engineers are summoned to the scene, and their solutions to free the truck range from raising the overpass to digging grooves in the pavement beneath the truck tires. Suddenly a 6-year old boy passing by on his bicycle yells to one of the engineers: “Hey mister, why don’t you let the air out of the tires?” When researching answers for battling MS, I set out to regain the mindset of that 6-year old boy. The 6-year old boy does not yet know fear and self-consciousness, therefore he has no worries about failure. He also lacks formal training, and without training the boy does not yet know what is impossible. Equipped with endless possibilities, the boy is free to see what has been overlooked by the experts.
Rosalind: Thank you for sharing this here!
About Bob Cafaro: Bob Cafaro has been a cellist with the Philadelphia Orchestra since 1985. In early 1999, he was diagnosed with Multiple Sclerosis.
Today he is in perfect health with no signs of MS, and he continues his career as a cellist with the Philadelphia Orchestra. In his new book, “When the Music Stopped: My Battle and Victory against MS“, Bob shares the knowledge he gained, and the steps he took to beat an incurable illness.